Thursday, January 31, 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page.
They are stories of activism, of inclusion, of advocacy, of education,
of hope and of love. These are the first from 2013.

I am proud to be involved in a new page and a new organization. Down syndrome Uprising is a place for the sharing of thoughts, ideas, passions and the
creation of a unified, global community of Down syndrome activists. Stop by, give it a like. Let's talk!

Down Wit Dat's Facebook page is well on it's way to reach over 1000 fans! Welcome to all our new friends. Please share!

Don't forget our Facebook Group! Down Wit Dat - The Group is an all inclusive special needs discussion forum. Join the conversation!

Wednesday, January 30, 2013

In the nascent early morning rumblings of my head yesterday, several things collided and suddenly made sense. That's usually the way things go; in these days of toddler wrangling-full time nursey-bloggy-exhausted-fire putting out-ness, it's amazing that I can find two neurons to rub together. It is never a full out Oprah "A-ha!" moment or a mad dash to the keyboard to hopefully catch the ideas that are pouring out my ears, but rather a mild "humph" that may or may not be audible as I shufflewobble downstairs to 'make the Tassimo go'.

You have to understand that my thought processes, when not consumed by my daily responsibilities are generally allowed to wander free range. I read a lot; and I read a lot online. Many things can pique my interest in the course of a day, so it's not surprising when a few of them float to the surface first thing in the morning, like the answer in a Magic 8 ball. Instead of "signs point to yes" this particular morning, while I shook out the cobwebs, I got "I'll have the coffee".

Let me explain...

Monday, I came across yet another example of the "singularity" of Down syndrome. By this, I mean that the general public, as a whole, has a perception of people with DS that is somewhere around 30 to 80 years out of date. Yes, I am generalizing here, but there are a great many people that look at DS as deficient, sick, fearful or something to be despised. As an aside, this is why I get annoyed at the crestfallen and horrified looks I used to get when I told someone new about Wyatt having DS. Last week, it was a family in Texas who did not want to sit near a child with Down syndrome in a restaurant.

This week, it is the Today Show and a fluffy segment on pre-natal testing. I am sure it meant at one point to provide a balanced view, but managed instead to convey some very thinly veiled biases. The test is presented as the first of it's kind (it isn't) and much safer and less invasive than CVS (Chrorionic Villus Sampling) and amniocentesis. It certainly is, but so were the other first line blood tests that we have been using for years. In the segment, an affluent, attractive 'older' couple is featured taking the test after proclaiming that [Down syndrome] "is one less thing to worry about". Also noteworthy is that this test only screens for Trisomy 13, 18 and 21, not the other myriad of genetic issues that could occur. The woman is 35 and described to be in a higher risk category. (By her age alone, she has a 1:385 chance, actually). Not surprisingly, the couple reveals that they are "safe" later on and neatly steps around what their decision would have been if the test had proven otherwise.

The show also uses an "expert", a doctor who uses outdated and paternalistic terminology ("Down's baby") and states that this bloodtest "... allows people to really think, what’s the realistic expectation of
this pregnancy and what does my life look like with this new baby?" I guess this information will have to come from personal research as she did not explain how exactly this was supposed to happen and no examples or resources were offered. Finally, the whole thing is glossed over by focusing on the 'bonus' gift of this test: the baby's sex can be discovered weeks earlier than using 'traditional methods'.

Nowhere does it mention that DS can happen to any age mother, or what less affluent people who potentially cannot afford the $2000 USD price tag (that may or may not be covered by private insurance) will do or what social ramifications or possible further stigmatization they might face because of this. There is also no mention how a positive result would have been handled in the doctor's office. Sadly, the subject itself is worth so much more than a fluff piece ending with a happy, affluent "safe" couple opening a giant present to reveal to the world that their unborn baby is a boy (and how delighted they are at this news). We wonder how, in this day and age, a person could be so hateful to demand to not sit in the booth next to a boy who looks a little different. Yet, we continue to ignore how stereotypes of Down syndrome are perpetuated in media and popular culture, even subtly. I continuously find these things frustrating and disheartening.

Also this week...

I ran into a blog that asked why there were so few blogs about older people with DS. The author (who I do respect a great deal), suggests that it is because parents "get over" Down syndrome and find that they don't have a lot to talk about. Or, it's a generational/technical divide. I will buy the technology angle to a certain degree, but I'm not so sure I agree with the former. I'm sure there is a lot of initial enthusiasm about writing and making a difference when you first have a child with a little extra, much like the first week of January finds a lot of people sweating away at the gym with conviction. As time goes on, those people start to fall by the wayside. That's because most bloggers, by nature, are not writers, just like the January folk at the gym are not athletes. Life gets in the way too; as kids get older, you actually have less time, not more, with activities and therapies and the like. Skills are not learned at a furious rate, like in the early years. I'd put forth time as a better obstacle to blogging than "getting over" Down syndrome. I'd also hesitate to discourage new parents from setting up blogging-shop; I've learned a great deal from the stories of new parents, especially those that have occurred a decade or so apart. Those parents of adults with DS, in a lot of cases have continued their advocacy, just not in this format. There are also more than a few self-advocacy blogs popping up here and there. The idea that the parents of young children with DS make all the noise, while the older, wiser parents just quietly get on with life is a little insulting, frankly. I may not have the track record to prove it yet (other than two years of publishing at least weekly), but I plan to be here for quite some time. These kind of things irk me as well. There is so much division in the Down syndrome "community". Pro-choice, pro-life, pro-test, anti-test, pro-homeschooling, pro-inclusion, pro-religion, athiesim, science... Often heatedly discussed. How can the general public take us seriously when we can't offer the same courtesy to each other?

The answer, it seems, came to me in the form of another FB find. A friend shared the following story and I shared it on the Facebook page on Sunday. I've since researched it a bit and the story has changed a bit here and there... sometimes it's a wise grandmother, sometimes a father. Regardless, the anonymously penned story goes something like this;

A young woman went to her grandmother and told
her about her life and how things were so hard for her. She did not
know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.
Her grandmother took her to the kitchen. She filled three pots with
water. In the first, she placed carrots, in the second she placed eggs
and the last she placed ground coffee beans. She let them sit and boil
without saying a word. In about twenty minutes she turned off
the burners. She fished the carrots out and placed them in a bowl. She
pulled the eggs out and placed them in a bowl. Then she ladled the
coffee out and placed it in a bowl. Turning to her granddaughter, she
asked, "Tell me what do you see?" "Carrots, eggs, and coffee," she replied.
She brought her closer and asked her to feel the carrots. She did and
noted that they got soft.She then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg.
Finally, she asked her to sip the coffee. The granddaughter smiled, as
she tasted its rich aroma. The granddaughter then asked. "What's the
point,grandmother?" Her grandmother explained that each of these objects had faced the same adversity--boiling water--but each reacted differently.
The carrot went in strong, hard and unrelenting. However after being
subjected to the boiling water, it softened and became weak. The egg had
been fragile. Its thin outer shell had protected its liquid interior.
But, after sitting through the boiling water, its inside became
hardened. The ground coffee beans were unique, however. After they were in the boiling water they had changed the water. "Which are you?" she asked her granddaughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?" Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?
Am I the egg that starts with a malleable heart, but changes with the
heat? Did I have a fluid spirit, but after a death, a breakup, a
financial hardship or some other trial, have I become hardened and
stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?
Or am I like the coffee bean? The bean actually changes the hot water,
the very circumstance that brings the pain. When the water gets hot, it
releases the fragrance and flavor. If you are like the bean, when things
are at their worst, you get better and change the situation around you.

I posted that quote originally as it resonated deeply with me. I've been through many personal trials and at various times have come out the other side being the egg or the carrot. I see it every day in life, in my work, in my family. You either are hardened and have limited uses, or become very soft and easily destroyed. When it has come to Team Logan, specifically Wyatt and his Down syndrome, I changed my tactics: I became determined to be the coffee bean and change my environment. I think I did that, through this blog, through my page, through my group. I created something that others could enjoy at the same time. And hey, we're talking about coffee for heaven's sake.So, yesterday morning, as I puddled around and tried to make sense of what I had experienced and the things that were bugging me, I chose the coffee, both literally and figuratively. Instead of passively allowing stereotypes to continue, I was more determined to speak out. Instead of dividing a community, I am more determined to help build a unified one.

If we want change, we have to be the change, as the old saw goes. We have to continue to speak out against the use of the R-word, to change the stereotype of the 'kid who won't amount to much'. The only way to do this is to work together, not to try and outshout each other. We have to realize that we are doing this not just for our kids, but for all the ones that come after as well. I'll have the coffee. I'm going to need the energy, methinks.

Friday, January 25, 2013

As those of you that are on Facebook with me/follow my Facebook page know, Wednesday was a bit of a surprise. I came home from my last night shift on Tuesday morning to a phone call from Sick Kids hospital, asking to move the appointment for Wyatt's sedated echocardiogram/ECG up. Way up. Originally the appointment was for April 3rd; we had set it up a week ago and I just submitted the paperwork to ensure that I had that day off.

Nope.

Instead, it was to be the next day. According to Sick Kids, Wyatt's regular cardiologist (the one with the fish) was a little annoyed that the appointment was to be so far into the future. It was also one of those situations where it was either going to have to be Wednesday or the following one, where I was working nights, so the decision wasn't much of a stretch. However, we're still not fans of the "how about tomorrow?" appointment, because the last time that happened, Zoe ended up having surgery. Going to downtown Toronto isn't all that easy for us these days either. We have three kids, a giant-ass van that does not like underground parking much and a drive that will range from an hour to three hours, depending on traffic. Sean and I hummed and hawed over it, considering our logistics. However, it was a needed thing, so to my way of thinking, it was best to seize the moment and get it over, like ripping off a band-aid.

We went for the band-aid, trafficky, potentially van scraping option. A dear friend kindly offered to look after the Zoester and Quinn for the day, which eased things a bit. The night before, we hatched our plan: we had to be there for 8:45, so we had to drop the kids off between 6:45 and 7, hit the highway and pray that the rush hour traffic gods were kind.

Not surprisingly, they weren't. At 8:30 we were well ensconced on the Gardiner "Expressway" and had no idea how much longer we were going to need to get to a hospital that was 10 minutes from that spot. Despite the gorgeous view of the rising sun filtered by the steam devils spiraling up off Lake Ontario (with a few silhouetted leafless trees here and there), I wasn't happy. I called ahead and cooly slid into the registration desk around 9:25. I was in much better shape than our last Sick Kids appointment a year ago; Sean scored some decent parking across the street for the Whaaambulance and joined me a few minutes later. When he caught up with us, Wyatt and I were firmly entrenched in a game of "socks", where he pulls off one of them (he had already lost his shoes in the van), laughs, wiggles his toes and waves the sock around, daring me to grab it. Which I always do and put it back on his foot, because that's what Mommies do. It's a lot of fun and his giggles were infectious.

We were eventually called in and Wyatt was weighed, measured and dressed in a little flannel gown. He was hooked up briefly to get a set of vital signs and you could hear the warning-panic in the nurse's voice as she called out to her colleague "He's SATing at 94!" I calmly explained to her that this is normal (for him), no, he doesn't require oxygen and he has an AVSD; eventually she settled down and went about her morning. Wyatt checked out his new digs while I answered all the pre-sedation questions. He burbled happily and was very interested in all the grown up goings-on around him.

My kids are used to getting oral liquid meds, especially after our last round of colds/flus that rampaged through our house in the late fall and early winter. A nurse handed me an almost full 10 cc syringe and Wyatt opened his mouth expectantly. They asked me if I needed to wrap him (to restrain him) and I just looked at them, astonished. This had never occurred to me, even though I restrain people for a living. I can count on one hand the amount of times I've had to hold his head for medication and then after the first taste, he stops protesting and finishes the dose. I waved their offer away and went to give it to him. He can only take a little at a time to make sure that he swallows it, so this was going to take a few moments. After the first little squirt went in he naturally made a face (chloral hydrate tastes awful, I put in in OJ for my patients), but opened his mouth again trustingly for another round. After the second time, he turned his head away and I was in the middle of coaxing him back for more when the one nurse suddenly grabbed his face while the other grabbed his hands.

Naturally, he fought back, but I managed to get the needed amount in there. He's cutting three teeth on the one side of his face, so I'm sure that was throbbing by the time the one nurse let go. I was shocked to be honest... As I've said, I do this all the time with adults but I am telling you now that I give even our most ill of patients more time to make up their mind than that. I understand things were behind schedule and that lots of kids probably need the cat-wrap method of medication administration, but mine isn't one of them. Not surprisingly, he was completely pissed off, hurt, was not compliant with anything else and he let everyone present know exactly how incensed he was for a very, very long time. The nurses disappeared in a swirl of curtain and we were left with our screaming little boy. We walked, we jiggled, we did the parent dance. I would sing to him quietly and his crying would taper off a bit, especially as the medication started to kick in, but he would still screech at random intervals. He became very selective with his song choices as he would react poorly to certain songs and be super happy at others. His favourite seemed to be Twinkle Twinkle Little Star. Even the ABC's or Baa Baa Black Sheep was not good enough, it had had to be Twinkle Twinkle... (as a side note, this is Zoe's favourite song). He would request it, throwing his hands up in the air to mimic the "up above..." part and throw his head back and half laugh/half scream and almost catapult himself out of my arms. He did this over and over and over again as I sang in my early morning "I need coffee" cracking middle aged voice. You could almost hear him say: "Twinkle, Twinkle, dammit! SING IT, Mama! WOOOOO!" As it turns out, my wee son is an angry drunk.

The dose he got would have knocked out quite a few adults, but he fought the sedation for as long as he could. His eyes would close, his breathing would change and I would think "he's out..." and he would suddenly cry out and try and sit up and yell at us some more, almost as if to say "...AND ANOTHER THING!..." He would swing out at us blindly and generally let us know that we were all a bunch of jerks (and he wasn't going to stand for any of it). Four times I watched him do this... the third time I laid him on the bed and held him with my hand at the back of his head, stroking his forehead and singing softly to him. The tech that was to do the echo wheeled in the machine during all of this and appeared to be quite put out that he wasn't asleep yet and should he get more sedation? I explained (over the howling) that he was pretty annoyed and that he had quite a lot of sedation already , but she didn't seem to get it and pouted off. The fourth and final time, a full forty five minutes after we gave him his meds, Wyatt was finally down for the count. I exhaled, exited the curtain with Sean and told the nurses that we would be back in another 45 minutes, the length of time the tech told me the test would take.

We went downstairs, had breakfast, doused my (now sore) voice with some tea and relaxed for a few minutes. We were punctual and a little concerned to see the curtain still around Wyatt's crib when we returned. Ten more minutes, we were told, as the tech waved us away. We went outside to the waiting room and came back ten minutes later to be told it would be yet another few minutes. I chose to sit at the bedside, which turned out to be the right decision as it was apparent that Wy was starting to wake up. The tech said she was finished, we wiped off the goo and started about the business of getting him sorted out. She whipped back in a moment later and stated she needed two more angles; the nurse and I rolled our eyes at each other as Wyatt was now very much awake. He was given a small bottle of baby juice (which he never has; we give him diluted regular juice) and not surprisingly, he and his post-sedation cotton mouth LOVED IT. The look on his stoned little face said it all after the first sip: This was the best freakin' juice EVER! It also kept his hands busy for the 5 minutes that was needed to get the last two shots. She shut off the machine, went to speak to the Dr., and we set about getting our still drunk, but now happy, boy cleaned up and dressed. He was sticking out his tongue and laughing at people, not to mention trying to blow raspberries (which wasn't that successful, yet still hilarious). We were having a great time when the tech came back and insisted that there were "just two more pictures" that the radiologist wanted. The nurse and I exchanged looks again as I unbuttoned Wyatt's shirt and fed him more juice. I let the tech know that this was the last time and if the doctor wanted any more views, he could come get them himself. Again, she pouted off, but I was beyond caring. I wasn't a fan of her "make it stop moving" attitude towards my son and for the love of all that is holy, I could have done that echo faster.

Still giggly-wobbly and working on his juice, Wyatt went back into the stroller and we set him on a 45 degree angle. It was now almost noon, our appointment with the cardiologist was supposed to be for 10:30 and for some reason, the tech didn't have time to do a simple 12 lead ECG. (?!) We went over to the cardiac clinic and hung out in the waiting room for a bit. We ended up being called in prematurely and had to go back to the waiting room to wait for our ECG, but finally, around 12:30, we got to see the Residents.

I don't make it a point of outing what I do and who I am, but there are occasions that definitely call for it. An assessment of your son by a second year Resident can be one of those times. She was quite nice, but a bit flippant and hadn't quite hit her health teaching/talking to people stride yet. (Or, maybe I was tired and hypersensitive to her body language... or both.) About the point she started talking very slooowly I let a few bits of jargon slip. When she asked why he had never landed in the ER, I told her flat out I was an RN. The conversation changed dramatically after that. I swear she even sat straighter in her chair. That completed, her and her colleague attempted to do a physical assessment on Wyatt, who after his morning ordeal, would have none of it. He playfully dodged all their attempts at distracting him with various medical equipment and wouldn't allow them to do a damn thing. At one point he expertly blocked the stethoscope with one hand and yanked it off her head with the other. I was thoroughly enjoying this until he started to get upset when one tried to hold his arms, at which time I went over, let him grab my fingers and we babbled to each other quietly while she attempted to auscultate the backwash of blood through the holes in my son's tiny heart.

The mood changed again a few minutes later with the arrival of the cardiologist. With an expert touch, he said hello to Wyatt, held his hand, touched my son's chest and got 'permission' to use the stethescope. He was so smooth that you barely saw it happening; he was finished listening and well into teaching the Residents about the Wyatt's various heart sounds like it was nothing at all. Each of them got to listen as well, which proves once again that a respectful approach to children (and a little bit of patience) works like a charm and you don't always have to break out the restraints. I still hold the hospital in very high regard, as should all of you. However, I think with our comedy of errors that day, we got the "B" team.

The cardiologist had reviewed all the data and there was some good news. The VSD part of his AVSD (the hole between the ventricles) had closed and was no longer an issue. He was surprised and I was a bit smug, as it had done exactly what he told me it would not do (and what I said it would). The two holes of his ASD however, still need repair and his shared-but-kinda-not-really valve(s) need complete separation. His surgery could be done now, or based on the current results, could be quite comfortably done a year from now. Sean and I looked at each other. My husband raised some very valid concerns about Wyatt's development, his potential for back sliding and how it might actually be less detrimental now than a year from now when he is (hopefully) walking. The Doc looked at me and I shrugged, validating Sean's concerns and indicating that I looked at this reasonably mechanically and that the sooner it is fixed, the better he will be and the sooner we can put all this behind us. He nodded to both of us and agreed to present Wyatt's case to the surgeon, who will ultimately decide on a surgery date of either now or a year from now, but quite probably, we will receive a phone call in 3 to 6 months for his pre-op appointment. His surgery would be shortly after that.

This is going to sound silly to some of you, but one of my major fears all along is that somehow, at some random time, his heart was going to destabilize and be in big trouble. I have been living with this fear for two years ago this month, when I found out about his AVSD in the first place. This fear seems to have gone for the most part, in the large sigh I let out as we wheeled my once again unconscious son down the hallway and headed for the elevator. We still have scary-open heart-surgery fears looming on the horizon, sure. There are also a lot of 'maybes' in this schedule, which for me, has to be planned pretty much in advance to ensure that I have enough vacation time, etc. But, it is more than we had going in.

Wyatt was pretty sleepy for the rest of the day and would nod off at regular intervals. I had to physically sit with him on the floor when Sean went to get the other two kids as he would fall asleep sitting up and bowl over. Both of his siblings missed him; Zoe apparently started saying "Wyatt! Wyatt!" the moment she laid eyes on the van. When the open door didn't reveal her twin, she looked around and then turned to her father, asking "Wha Wha Wyatt?" Sean explained to her that he was at home and she immediately began to pout and well up. On arrival, I could hear her at the front door continue with "Wha Wha Wyatt!" and her shoes click across the hardwood. She strode into the livingroom, locked eyes with her twin... and strode on past him with barely a nod. She missed her big brother, but she's just too cool to make a big deal out of it, apparently. She's not very good at maintaining this little charade however, as she has been bringing him toys and addressing him by name very frequently since then. Of course, this only happens when she thinks we are not looking. Wyatt has suffered no ill from his experience and has returned to his normal, happy self.

When I got back in the van after dropping the kids off Wednesday morning, Three Little Birds came on the radio. I updated my Facebook status, hoping that it was an omen for our trip (as Sean and I were doing anything but smiling with the rising sun). As it turns out, it was a portent of sorts. Things did turn out to be okay, despite all the stress and shenanigans. We have a kinda-timeline and a better understanding of what is happening with our son. Wyatt will need surgery, but it is for another day. As I said to the cardiologist on Wednesday, we were expecting him to go into CHF shortly after he was born... and he didn't. We expected it by three months, by six months, by a year and instead, he has defied everything and is thriving. With the closure of the VSD, he has been given an extra little boost. His lungs are clearer and he has more energy to explore his world and learn new skills. (Which he is, as he is trying to pull himself up at any opportunity). As his Mom, who knows a little too much for comfort, I have been waiting for the other shoe to drop for two years. With our trip downtown, 'every little thing' was not perfect, certainly. For the the first time in years however, I feel like things are finally going to be all right.

Monday, January 21, 2013

This is a sentence I hear often. "I don't know how..." can refer to a lot in my world: my son with special needs, my twins, my kids, my job... my life. I hear it most often in regards to my family; often it's a nod towards Wyatt and his Down syndrome. I have a few answers for these situations now as after almost two years of hearing this phrase, I've gotten pretty good at the snappy comebacks. Truth be told, I've also had lots of experience prior to this, being a mental health nurse. There is nothing quite like being at a party and seeing the inevitable step backward when you mention you work in psychiatry (from everybody... including other nurses). Caring for the mentally ill isn't everyone's cup of tea, but it's mine and the reaction I get when disclosing this fact is often simultaneously amusing and annoying. The comment is especially perplexing when it comes from a palliative or oncology nurse as I have absolutely no idea how they do their job, but I digress... Let's just say I hear "I don't know how you do it" a lot.

Another thing I encounter frequently is the notion that I am some kind of hero or heroic parent. I'm not. As much as I appreciate the compliment (and I realize many people don't know exactly what to say sometimes and that, in itself is okay), I am not a hero, expecially when it comes to parenting. I snap at my kids from time to time and they all have limits set on their behaviour. Having a child with special needs/choosing to have a child with special needs is not in itself, heroic. Raising a child with special needs is not either, at least from where I am sitting. Raising Wyatt is a little different than raising his twin sister, that is true. Parenting my twins is also different than parenting my eldest child as well. There are no heroics there. Just differences.

"I take care of my kids"... What you want, a cookie?

That's why I'm a little puzzled at the next story.

A waiter, in Texas, was called over by a family seated in his section. They asked to be moved as they did not like the child with Down syndrome seated at a nearby table. So much so, that they were reportedly heard to say "special needs kids should be kept in special places". This particular child was described as well behaved and not causing a disturbance (which is pretty awesome, for any five year old). You can read the story where I first read it, here and here. The waiter then told the family who made the complaint, who were also regular
customers, that he would not serve them. They then left, apparently
giving the Mom of the child a bad look.

The request and subsequent comment are awfully ignorant and abilist, to be sure. What irks me a little is that this waiter, who did the right thing, is being lauded as a hero. He is a good person, but I'm a little saddened that we have to make such a big deal out of this. It shouldn't be, as this sort of bigotry should be met with this kind of response every day.

But it isn't.

It's very sad, that in our culture, a simple act of decency creates a hero. This sort of response should not be above and beyond what is expected. It should be done, without thinking. There is no reason why this type of prejudice should be tolerated.

But it is.

Another server might have been afraid of losing his or her job and therefore might not say anything (in this economy, that kind of thing is totally plausable). Another might not care at all, who knows? Regardless, I don't see it as an act of heroism, I see it as the natural response of an enlightened human being.

I don't consider this waiter, or myself, or any special needs parent, to be heroes. Perhaps it's my nurse-ness that affects my vision here, but I save that definition for those that do the extraordinary. We do what we do, because we want to and think that it's right. Nothing more. Raising my son in a loving family environment is no different than my other two. We do it as he is our child.

A friend posted the following song to our Facebook group. Written and sung by Jennifer Shaw (whose son has Sensory Processing Disorder) it is a tale of many special needs parents. Many parts of the video may resonate with quite a few of us. It is a beautiful, simple song with some lovely imagery. It's worth a look. It also sums up what I'm saying here.

I'm not a hero and I'm just like any other parent: I do the best I can with what I have. My schedule may look a lot busier than yours, but this is the life that I have chosen. It's a good life too, full of hope and promise and love. Sure, there are days that I'd like to think of myself as a "special needs warrior goddess mom", fighting ignorance and intolerance, riding into town on a tiger with a weapon in every one of my eight, capable hands.

Monday, January 14, 2013

I played the fool today
I just dream of vanishing into the crowd
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe
And I can't ask for things to be still again
No I can't ask if I could walk through the world in your eyes
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe...

If you haven't figured out from the blog titles or the song lyrics interspersed throughout my writing, music plays a big role in my life. It is high on my list of coping mechanisms and the soundtrack to my life, contrary to my rocker exterior, is quite varied. As I've said before, music is magical; it can make your soul soar to the heavens and then hurl you to the depths of despair. It can create a mood, it expresses what the tongue or pen often cannot. If you're like me, you will often find yourself struggling to grasp a thought or feeling when along will come a piece that will make you say "Yes! Exactly!"

Melissa Etheridge did that for me once.

Two years ago yesterday, as I was wrestling with the news that my unborn son had an AVSD and a very high likelihood of a chromosomal disorder, I listened to a lot of music to try and remain calm. As hysterical as I wanted to be, I had to remain calm for all three of our sakes. I also had to let a whole bunch of people know that my naive little bubble had popped. All was not well with my pregnancy, all was not well with the health of my babies. So much so, that the pain of it all permeated everything. Every task I completed, every moment, both awake and asleep seemed saturated with this new development. As I struggled to maintain my composure, to pretend that it was all no big deal, it all had to come out somewhere. It hurt, seemingly, with every gasp that I took.

So, I published a "note" to Facebook for all my friends and family. The reach was a bit larger than I was comfortable with, but that was the price I had to pay for not seeking out those closest to me one by one. Entitled "It Only Hurts When I Breathe", stealing a lyric from Melissa's song that I had been listening to as I wrote, I brought everyone up to speed, fast. Two years later, as I reread those words and summon up those old demons, I'm struck at how far we have come.

Almost two years later, I have three reasonably healthy children (Boogie Wonderland/Expectorate Boogaloo aside). We are waiting for the pre-op appointment for Wyatt's heart at Sick Kids and there are some appointments in the next month, but other than that, it is business as usual.

In those long, sleepless nights before and after they were born, one of the things that I worried about (aside from the myriad of other things) was their "twin bond". As a culture, we like to mysticise this relationship, but the truth is that it exists and no chromosomal differences are going to interfere with it. My twins, despite their physical differences, still play together. They roll over each other like puppies and protest when one steals the others toys (it goes both ways, trust me). Wyatt has learned to hold his own and will shove and pull Zoe down when she annoys him. Here's a video I shot this morning of them fighting over the dinosaur. You'll see Wyatt hold his own and voice his protest a couple of times. You'll also see him tickle her foot and her to talk directly to him once or twice.

Wyatt and Zoe Fighting Playing with the Dinosaur

They are also very aware of the other; when one is upset and needing comfort, the other will most likely seek some too. Wyatt managed to pull a lamp down on himself the other day; I had two crying toddlers in my lap for the better part of half an hour afterwards. If Zoe wakes up first in the morning, you can hear her trying to wake her brother up. Once awake, the two will "talk" back and forth to each other. This used to be very rudimentary with babbling, but now that things are getting more sophisticated, there are some words thrown in here and there. I cannot describe how beautiful it really is. Watching them play together despite their differences is also a thing of beauty... a fleeting thing, but a thing nevertheless.

Playing nicely together. A moment later, chaos resumed

Overnight, Zoe has gone from "baby" to "little girl". A goofy little girl that is smart as a whip and makes me want to squish the stuffing out of her even when she is driving me insane. She toddler giggle-word salads her way through the day with the occasional crisp sentence where you least expect it.

Where have I seen this kid before?

Oh. Right.

Wyatt is still developing strong. He practices his kneeling whenever he can. We are also working on his standing, but it isn't independent enough for me to get a shot of it yet. He's popping out molars at an alarming rate and not surprisingly, is more exploratory with food. He's also shoving it in as he has gained a lot of weight since his last check up. Zoe has traditionally weighed at least a pound or more than him, once she caught up to him at the three month point. As of this afternoon, he weighs 5 more ounces than her.

Born: 4lbs 1 oz, now 25lbs 7 oz

Born 4lbs, 13 oz, now 25lbs 12 oz. Boom!

Somewhere, along the way, things stopped hurting so much. When you look at my babies now, it's really not that much of a stretch. Most of it seems silly in a way. I know that meeting him in person blew a lot of doubt and insecurity away, but the learning and experience I have gained since then are the reason that Wyatt's differences stopped being such a big deal. The people I have met, both virtually and in real life, have helped me along. Soon we will learn the details surrounding Wyatt's surgery and after that is over, I will finally exhale, deeply and with conviction.

Today, we are more than "all right". That pain is gone... and in it's place is a bustling, busy little family that I am blessed to be a part of. New pains will come. There is a big one in the wind. Until then however...

Monday, January 7, 2013

Being the 7th of January, it's more than time that I write something for the new year, don'tcha think?

But what to write? I'm in the enviable position right now that there is nothing pressing on my brain pan, as eager to get out as a golden retriever pup into the first snowfall. Things are quiet again. Things are in-between again. I have a list of people that I have to call today, of appointments I have to make. I'm tempted to leave it until tomorrow, just to have one more day of in-between peace.

That's not to say that things aren't happening around here right now, because they are. Both babies are rapidly becoming babies no longer. Each new day brings new things, new masteries. There is a lot I can tell you about teeth and four point crawling and self feeding and new discoveries and talking and the task of switching them both over to a new size... and I will, rest assured. Just not right now. I want to stay in the in-between. Its relative quiet is soothing right now. After the hectic holidays and over two months of sickness and working through the New Year, you will permit me this little self indulgence.

There is still a lot to consider here in the in-between. It is a softer place than others, full of things like gratitude and remembrance and reflection. There is little "tasking" like there is in other places and a lot more awareness. Like this morning... Normally, Miss Zoe is a whirlwind of colour and noise by breakfast; unfortunately our little Zornado had a restless night and woke up several times. I'm not sure if it was bad dreams or what, but she resettled herself each time. Sean carried them both downstairs for breakfast sometime around 10 am this morning and standing Zoe on the kitchen floor, started about the job of buckling Wyatt into his chair. Zoe disappeared upstairs in a flurry of little bare feet and returned shortly afterwards with her blanketbunny and tookie (soother). Normally, they reside in her crib during the day; she happily flings them aside to get a running start on the day. Not today. Bunny had to sit near her at the table and once breakfast was finished, she curled up with us on the couch. Still in her jammies, her eyes wide and her fingers entwined in bunny's familliar softness, she rested, watched TV and had a quiet morning with us. Wyatt took up the assignment of tearing the living room apart on his own, but for a few hours we spent an almost magical sweet time with our little girl. She has since regained her energy and her almighty screech, but for a bit I got to snuggle with my girl without her restless squirming. I got to consider how long and beautiful (and how unlike mine) her eyelashes are. How very big she is, yet how small and delicate her features still are. How perfect each little one of her "toesh" are, even if she does have her Dad's Fred Flintstone feet. A camera was no where at hand to capture this time, so I only had my mind's eye to freeze this morning forever. It's certainly not as reliable, but I'm hoping in my twilight years that some of this will remain, when so little else will.

As we cuddled on the couch, Zoe occasionally sighing as I stroked her hair, Wyatt surprised me with his determination. In his crawling around the floor, he had arrived at a point where the coffee table blocked his view of the TV. He heard Super Grover come on and instead of attempting to crawl over to a better vantage point, pulled himself up to a high kneel on the coffee table and shoved all the toys out of the way to get a better view. I started laughing, almost dislodging Zoe who was curled up in my lap. His solution was elegant in it's simplicity and he smiled, his chubby elbows bracing himself on the table as Super Grover showed up for another awkward adventure. He has come so far in the last few months, despite the rounds and rounds of viruses and bacteria that have sapped his energy and impacted his ability to breathe. I am grateful to see the spark back in his eyes and the impishness back in his grin. I am grateful to see that his ears have become unblocked and other than the discomfort of growing teeth, is returned again to health.

My eldest had become a little house happy over the Christmas break. I think he was as relieved as we were to return to school this morning, to see his friends and return to a routine that involved more than meals and bedtime. He'll turn seven this spring... all angles and coltish, he amuses us every day with his "awesome dance moves" and "beautiful singing voice" (his words). He is kind and artistic and scientific and everything I would ever imagine I would want him to be. Even when he leaves gobs of toothpaste in the bottom of the sink or "art" all over the house.

Before Christmas, Sean and I found ourselves having a shared moment of thankfulness. We had gone out early to do some Christmas shopping and although we had fed all the kids and deposited Quinn at school, we had neglected to look after our own needs. We stopped at Tim's, grabbed a breakfast sandwich and some coffee and plunked ourselves down at one of the tables in the sectioned off area in the mall and began to wolf our breakfast. The twins were in the stroller and were given a Timbit or two to nibble on. I was finished my sandwich when I looked up and nodded to Sean "Look. Twins". A couple was wheeling up to the Timmies kiosk with a huge double stroller complete with baby buckets and lots of blankets... the tell tale signs of new-ish little ones. The Mom saw our stroller as they were wheeling up and called out to us "You have twins too?". We smiled back and the inevitable twin parent conversation ensued. While her SO waited in line, she leaned on the mini wall and we talked about our kids. She looked like any other twin parent in the first year: exhausted, unwashed, rumpled and in great need of adult conversation. I was briefly shocked when she asked me "were there any complications?", and nodded that yes, they had spent some time in the NICU. I held back Wy's heart issues and DS as I didn't want to scare this new-ish, still exhausted Momma; although there is really nothing scary to me (and you), being in the know, it's a bit unsettling to some people, especially complete strangers.

As it turns out, this Momma needed this conversation much more than I had thought.

Her twins, a boy and a girl, were nine months old at the time of this meeting. Although they were born at the same hospital as mine, her son was whisked immediately to Sick Kids. He has Situs inversus (mirror organs) and had a few complications that went with this (although he was much better now). Her daughter had difficulty breathing and a few abnormalities, such as a cauliflower ear and a few other things, such as an umbilical hernia. They were in two different hospitals for months. I could empathize a bit with the NICU stay, with the worry and having to quickly get your head around new and seemingly frightening things. I told her, as we sat in our island in a busy mall at the height of the Christmas shopping season, about Wyatt, his heart and his extra chromosome. She flinched, like everyone else does when they hear the words "Down syndrome", but at my casualness, my son's adorable chatter and the recognition that both her still tiny ones too had delays ahead brought her around quite quickly. I also think that watching us have a relaxed coffee together also calmed her a bit and gave her a bit of hope for the future. The first year of twins can be hell; you don't fully understand that until you are in it and you don't understand how far you have come until you are on the other side of it. We took our leaves and as we strolled up the length of the mall, Sean and I talked about our chance twin encounter. We both were of the mind that we were very very thankful... that both our kids had been reasonably healthy, all things considered (AVSD's, chromosomal disorders and inguinal hernias aside), that our NICU time was reasonably short and that we had reached the point of being able to savour a cup of coffee, on a reasonable amount of sleep, before spoiling our kids at Christmas-time.

There is a storm coming, that much I know. I can't see the clouds gather yet, but it shimmers, like a migraine aura, on the periphery of my vision. This year, although one of great promise, will still hold some darker times for Team Logan. That's not a subject for today either, here in our in-between. What we do have is an appreciation of certain parts of 2012. This blog, its growth, its accomplishments, its wonderful fans and yes, even its critics. I am thankful for all of those who read weekly and share some of the things that I put down here. I have been doing this for almost two years... that is another passage of time that causes me to shake my head in disbelief. January 13th is the two year anniversary of my first post, recounting another storm, namely my son's in utero AVSD diagnosis. Soon it will be their second birthday, if you can believe that either.

Here in the in-between, there is comfort; security. Despite what is coming, the sun is still shining here and it feels warm on my face. I am acutely aware of my many blessings and my surroundings, as I sit here and write. I'm aware of my coping mechanisms too, as I wear a Hawaiian style shirt and flip flops with my khaki's rolled at the ankles while the reflection of a Canadian winter wavers ever so slightly on my screen as I hit each key. There is thankfulness. There is much gratitude. My daughter and I are very alike, as I wind my fingers through this time and settle with it's familiar softness. 2013 has started with contentment. There's a lot to be said for that. I will excuse myself for the time being however as there is a little girl with a bunny who is gazing up at me with dark pools for eyes as she puts her head on my knee. There's another little one behind me making clear "lalala" noises at some of his favourite toys; yet another sound that will raise eyebrows with his workers. I think those phone calls will wait until tomorrow. The in-between is much more promising for today.

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna